Today, May 15, is pathological demand avoidance syndrome (PDA) awarness day. Pathological demand avoidance is a subtype of autism characterized by extreme anxiety, a need to resist everyday demands and a need to be in control. Core features include:

Passive early history in the first year, avoiding ordinary demands and missing milestones.

Continuing to avoid demands, panic attacks if demands are escalated.

Surface sociability, but apparent lack of sense of social identity.

Lability of mood and impulsivity.

Comfortable in role play and pretending

Language delay, seemingly the result of passivity.

Obsessive behavior.

Neurological signs similar to those seen in autism.

When I first wrote about PDA, I wasn’t so sure I believed in its existence. I recognized and still recognize many features, but the condition isn’t recognized in the Netherlands, so I can never be sure whether I have it. Also, I doubted whether my behavior may be a normal reaction to being in an institutional environment for too long. However, when I read stories from adults with PDA or parents of children with PDA, I recognize a lot. I am going to write about this now.

Pathological demand avoidnance is an autism spectrum disorder that shares traits with oppositional defiant disorder and reactive attachment disorder. However, children with PDA are not willfully naughty. The only rule I routinely broke was the one about not stealing candy. Then again, doesn’t every child do that?

I was a quiet child. However, i could show aggression seemingly out of nowhere. I acted out particularly when my parents or sister wouldn’t do as I said. For example, even as a teen I had no clue when it was not appropriate to demand my parents do something for me and I’d get upset if they refused.

I was an early talker and quite sociable as a young child. For example, I’d shout “Hi!” at everyone we met in the streets. This is expected in the tiny village my husband and I live in now, but it is definitely abnormal in Rotterdam, where I lived as a child. I was comfortable – perhaps too comfortable – in social interactions with strangers. As I grew older, this got worse. This is what got me thinking I might have attachment issues.

I was very comfortalbe in pretend play, but on my own terms. Autistic children don’t tend to engage in pretend play with other children, but I did. I however dominated the play situation. I was always the one who thought out the scernarios we were going to play. I also made the rules of what was “proper” pretend play. For instance, my sister could not say “My doll said ___”, because after all she was acting out her doll.

Most of my life, I’ve been able to hold down a conversation, again as long as it’d go on my own terms. I tend to dominate conversations and make them about topics I want to discuss. When this happened at my diagnostic assessment, my parents said I wanted to make conversation about me all the time. This isn’t necessarily the case. For instance, yesterday a Christian nurse and a patient with his own set of religious beliefs were discussing religion. It wasn’t about me at all and I didn’t make it about me, but as soon as i jumped in, I tried to control the conversation.

The core feature that got me thinking about PDA as applying to me, is however my resistance to ordinary demands. This may be an oppositional behavior too, but in PDA, the need to resist demands is not out of defiance. It seems to be more a core need stemming sometiems from anxiety and sometimes from sensory issues. For example, children and adults with PDA might refuse to brush their teeth when asked, but this is commonly out of sensory defensiveness. They may refuse to do household chores out of anxiety. Interestingly, they may do certain tasks that create anxiety in them when they’re asked to do them by others, when they are on their own. I can do household chores much more easily when I am the one in control or when I’m on my own than when it’s someone else demanding I do them.

Children and adults with PDA are often described as Jekyll and Hyde. They can act perfectly normal as long as they’re in control and their anxiety isn’t provoked. However, when people make demands of them or situations or people don’t follow their rules, they have rapid mood swings. I definitely relate to this and often wonder whether it’s my autism or a borderline personality disorder trait.

Just came across a question on an Asperger’s page on Facebook. Someone asked whether we could name any historical genius without Asperger’s. Most people couldn’t, but this made me think of the validity of the whole Asperger’s concept in highly intelligent people, and whether it’s not just their genius that makes these people appear autistic.

If everyone who is a little quirky gets labeled with Asperger’s, it erodes the meaning of Asperger’s as a disability. I know that probably the people who can’t name a genius without Asperger’s, don’t see Asperger’s as a disability. That’s fine with me, but I for one do see it as a disability, having an Asperger’s diagnosis and clear difficulty functioning.

That’s in my opinion what it boils down to. Most geniuses can function quite well in life. They may have some trouble making friends with the average person, but that’s because they are highly intelligent and the average person isn’t. I did not start suspecting an autism spectrum disorder in myself until I found out that I couldn’t interact with my classmates at the high level high school either, while around 30% of them were gifted. In this sense, I feel the fewer labels the better, and I don’t see why you need a disability label if you’re going to see it as all positive. We already have the label of giftedness for that.

The reason I eventually sought an autism diagnosis, was not that I had a hard time making friends actually. It was because I was overwhelmed with even the simplest of daily tasks. If I didn’t have this many problems, I would be fine just being gifted. It wouldn’t mean I’d have absolutely no issues, because after all I’d still be a misfit among all average peers. But autism isn’t about fitting in or being able to make friends. If that were the case, many more people would qualify for the label of autism than is currently the case.

I was discussing this whole labeling thing with my parents yesterday. My father, who says I’m merely gifted and not autistic, said that Hans Asperger probably didn’t intend merely quirky kids to get his label. Rather, the kids he intended the label for were most likely unable to have any form of meaningful interaction and were completely preoccupied with their own special interest. I wouldn’t be an Aspie in this situation, but neither would anyone on the Facebook page. Now I don’t necessarily agree with this analysis of what Asperger intended his label to mean, and I don’t have his study at hand to look it up. However, DSM-5 backs up this portrayal of autism spectrum disorder in its description (and to some extent criteria) of ASD. I am not sure myself that I meet DSM-5 criteria for ASD, and I can see that many people diagnosable as Aspie under DSM-IV, don’t.

In my case, this has nothing to do with the criterion about the symptoms limiting people’s independent functioning, like many parents of severely autistic children say. I am most definitely impaired in my functioning. The problem areas I’m having are just not the core ASD impairments. But I am impaired.

For most all-genius-people-are-Aspies proponents, the opposite is true: they do have core ASD symptoms as their primary reason for being misfits, but they aren’t limited in their daily functioning. In this sense, I can totally see why parents of severley autistic children would not want them on the autism spectrum. Why lump people with no impairments together with those with severe impairments? That’s either stigmatizing the people with no impairments or invalidaitng the people with severe impairments. One of the main reasons people are fighting to keep Asperger’s on the autism spectrum, is because we most definitely have impairmetns and are in need of support. If Asperger’s is reduced to mere genius and the accompanying and inherent misfit status, I am not saying I want no part in it. Identifying as an Aspie would then be similar to identifying as my Myers-Briggs personality type, after all, and I do participate in places for that. It would, however, mean that I and many others who do have significant impairments, would need an additional label to justify their need for support.

What annoys me about the “autistic traits” thingy, is that it often connotes that 1. everyone who is a little socially awkward, has them, and 2. having autistic traits means you’re not as severely disabled as someone with full-blown ASD.

To start off with the first, I am aware that there is something called the broader autism phenotype, which includes people who are socially awkward and a little routine-oriented, but not enough to meet the criteria for an autism spectrum disorder. The important thing is that people on the broader autism phenotype usually do not have disabling symptoms. In both DSM-IV and DSM-5, it is a requirement for an autism diagnosis that your daily functioning is impaired to some degree. In my opinion, just being somewhat of a loner with a couple of friends, is not an impairment. Saying you have “autistic traits” when you’re truly just an introvert, trivializes the impairmetns of those with actual autism or significant autistic traits.

Then on to the second idea, which is pretty much the polar opposite of the first: people who just have “autistic traits”, are not severely disabled. Please realize that you cannot be diagnosed with autisms pectrum disorder in DSM-5 unless you meet all three social/communicative impairment symptoms. Autism is still seen as a social cognitive disorder, and I’m not sure that I think of this, but people who are pretty sociable, cannot be diagnosed with autis under DSM-5. Social development, however, is just one area impaired by autism. I for one am relatively sociable, but I still have severe difficulties in sensory processing and executive functioning, leading to quite severe impairments in self-help skills, significant behavior problems, etc.

Both my former nd current therapist trivialized my autistic impairments by referring to me as having “autistic traits”. I do have a formal diagnosis of an autism spectrum disorder, but havin this diagnosis constantlydownplayed, confuses and irritates me. Sensory processing disorder is not as much of a recognized disorder here as it is in other countries, but even if it were, the connotation is still that SPD is less severe than ASD. Executive functioning disorder is not recognized by most clinicians at all. This leaves a lot of children and adults with severe sensory processing or executive functioning difficulties either getting the wrong diagnosis, or getting less suppor than they need. I am not sure whether I believe adding more labels to the diagnostic manuals, is the solution to this. However, I do believe that children and adults who are having a lot of difficulty functioning in life, should get the support they need.

Recently, there appeared an article in the Journal of Autism and Developmental Disorders on why autism should be taken apart. I have not read the article yet – going to do so after I’ve had a good night’s sleep -, but I have read Harold Doherty’s comments on it. They follow the usual autism awareness rhetoric: my child is not like autistic advocates and therefore autism must be taken apart. And oh by the way, the DSM-5 is bad for calling the entire spectrum by the same name.

Let’s focus on that last bit. I own a copy of the DSM-5, and in the criteria for autism spectrum disorder, there are specifiers for:

With/without accompanying intellectual impairment.

With/without accompanying language impairment.

Associated with a known medical or genetic condition.

Associated with another neurodevelopmental, behavioral or mental disorder.

Furthermore, most people in the autism community know this, but there are three severity levels with coding of severity on each of the two symptom domains: social communicative impairments and repetitive behaviors.

Let’s contrast this with the DM-IV, which people like for its distinciton between Asperger’s Syndrome and autistic disorder. Anyone who has a communicative impairment, which could be just being unable to hold a conversation, and meets the criteria for Asperge’rs, could be labeled with autistic disorder. In fact, many of the autistic advocates Doherty and others disagree with, have an autistic disorder diagnosis. In terms of severity, also, the DSM-IV is pretty rigid in its focus: you only get the GAF scale, which determines a patient’s global level of functioning. I have a GAF score of 40, which means severe impairment in severeal areas of functioning. It is not stated whether this severe impairment is due to my autism or my borderline personality disorder or even due to the many labels I have on axis III (general medical conditions) and IV (psychosocial functioning).

I am not against subtyping of autism. In fact, I completely see how intellectual disability, language impairmetn, associated medical conditons such as epilepsy, etc., make a huge difference in an autistic person’s functioning. What I am completely against is the dichotomous taking apart of autism that Doherty etc. so often advocaate, where you eithr have Asperger’s (ie. social ineptness) or you have low-fuctioning, severe, classic autism. This dichotomy means that people who have severe impairments in self-care skills but, say, an IQ above 70 and no language impairmetns, are denied services on the basis of being merely socially inept. I don’t need to go into the consequences of this.

i’ve been thinking of a few issues lately, and I want a way to write them out. Particularly, I’ve been thinking about various topics surrndoung my various diagnoses. I’ve only got a few diagnoses – not nearly as many as my Facebook group memberships would suggest -, but I’ve had many off-the-record labels.

Firstly, I have a diagnosis of Asperger’s or autism spectrum disorder. My parents say the diagnostician just gave me thsi label in order to get me services. My former therapist in the old city institution doubted my diagnosis too, thinking my theory of mind is too good for ASD. Now that whole theory-of-mind thing is controversial, but well. This therapist wondered whether a more correct diagnosis would be acquired brain injury, because I had a brain bleed as a newborn which resulted in hydrocephalus. I used this off-the-record label to gain access to some groups for brain injury and am finding them very supportive. (Yes, I did explain my situation in each of the groups and made sure I wasn’t seen as an intruder.) I’ve asked people in the autism groups for their opinion on the brain injury/autsim link, and 90% replied that autism is purely genetic. Kind fo shortsighted in my opinion.

I’ve also been thinking about my mild but slightly worsening motor deficits. I always self-identified as dyspraxic but have recently gotten to wonder what my diagnosis was as a child. I saw a physiatrist (physical disabilities doctor) until around age eight and have many of the syptooms and complications of mild cerebral palsy, including a significant left/right disparity, the need for a cast on my left foot at age five and scoliosis. These issues do not seem to happen to dyspraxics.

In a way, diagnosis shouldn’t matter. I know this. I worry sometimes that I’m only seeking for diagnoses so that I can collect an impressive list of labels. I remember about ten years ago reading something about “Münchausen by Modem”, ie. the tendency of some people to join Internet groups for diseases they don’t have. Am I a classic case of this? I’m not sure, but some people think so. At least, the people in the Dutch DID organization thought so. I guess it’s about time I work on developing a disorder-free sense of self.

As I said yesterday, autism sucks sometiems. This doesn’t mean it needs to be eradicated. Then again, not eradicating it doesn’t mean not pursuing treatment for its bothersome symptoms. I would pursue treatment for certain symptoms even in an ideal society. For example, I take medication for irritability and anxiety and see no reason not to.

Where it gets trickier is when I’m forced by circumstances to pursue treatment, and others dictate what kind of treatment I get. I may legally be an adult, but I am not in a position to live without supports, which in essence creates a power dynamic in which my staff largely determine whhih of my symptoms get treated and how. Behavior modification is staff’s favorite treatment modality, and even though originally, behaviorists tended to include the environment in their assessments of behaviors, B-mod has largely gone down to ignoring and/or punishing “negative” behaviors and sometimes rewarding “positive” ones.

I put these two between scare quotes because, what is perceived to be a positive or negative behavior, is not always (or rather, is rarely) objective, and even when a behavior is by most perceived to be positive or negative, the way it’s handled may still vary depending on people’s perceptions of what is behind said behavior (which, I might say, the original behaviorists didn’t care about). For example, as long as I’m not acting out aggressively towards others (which icnludes mild verbal aggression), I can exhibit as much self-directed violence as I need to. I assume the idea behind this is that I’m borderline and borderlines need to be responsible for their own behavior and its consequences. I’ve had people seemingly more annoyed at the fact that they had to take care of my physcal wounds than concerned at the fact that I’d inflicted them.

Now we’ve moved past the times when cognitions, emotions etc. didn’t exist. Lay behaviorists (ie. most staff) have taken just what they want out of behaviorism. I remember in 2008 my diagnosing psychologist recommended a functional bheavioral assessment on my meltdowns. This includes close observation of behavior, antecedents and consequences, in order to hopefully find the stimuli that trigger the aggressive response. Now I’ve not yet figured out what I think of this, but I never got to, since such an assessment never took place. The staff introduced seclusion, used it as a threat when I became even slightly irritable, noticed that made my behaviors decrease and decided this was the cure.

Now let me tell you: autistics have as much emotion, cognition and sensation as neurotypicals, we just experience it differently. If you wouldn’t want to be subjected to harsh behaviorism yourself, then don’t subject an autistic to it. If you want to eradicate a behavior, observe its situational context closely and consider how you would respond in this situation. Is the autistic perhaps trying to communicate the same that you would in this situation, only using a different modality? Are they perhaps responding to sensory overload the same you would, only experiencing this overload differently than you would? If so, consider meeting the autistic’s needs beofre you attempt to modify their hehavior. If you want to modify their behavior anyway, consider whether you would want your preferred B-mod method used on yourself. I think everyone who has the power to seclude, restrain or tranquillize another person, needs to have expierenced it themselves first. Lastly, don’t assume that just because the autistic isn’t displaying behavior that annoys you, it means that they’re coping fine.

A few months ago, I became a member of some groups for pathological demand avoidance. Pathological demand avoidance (PDA) is a term coined by Elizabeth Newson from the UK for a set of symptoms that she claims are part of a distinct autism spectrum disorder. These symptoms include:

Obsessive resistance of everyday demands.

Appearing sociable on the surface but lacking deeper social understanding.

Excessive and sudden mood swings.

Language delay, possibly due to passiveness.

Obsessisve behavior, often focused on people rather than things.

Comfort (sometimes excessive) in role-play and pretending.

People with PDA are thought to have high anxiety and a need to be in control. This causes them to actively and/or passively resist demands placed on them by others.

I am not yet sure what I think of the existence of PDA. Is it yet another pathologization of annoying-but-normal behavior, or, worse yet, is it the new drapetomania? You know, the compulsive running-away of slaves? What I mean is, is it a healthy response to excessive authority? I was discussing something like this with my therapist last Thursday. I didn’t mention PDA – we’re treating my symptoms as part of borderline personality disorder -, but now that I think of it, I realize that the idea of PDA fits in neatly here. I have a seemingly compulsive need to resist expectations from others. Until I spoke about this to my therapist, I’ve always said this is a normal part of rebellion against the institutional system I’m in. Or is it? I resist attempts to give me responsibility for my own life, too, and earlier last week, realized I wasn’t sure I wanted to recover, out of fear of losing my support before I was ready.

Now I am not advocating labeling people with more diagnoses than they need. In my own case, it could well be that my problems are due to a combination of autistic overload, BPD-related identity confusion and having lived in situations where others determined my goals for much of my life. I am still unsure as to whether my therapist is not one of these authority figures, who wants independence only insofar as it isn’t defying her idea of who I am.

An important thing which Newson highlights in relation to PDA, is that ABA-style behavior modification does not work with PDA children (or presumabley adults). The therapeutic relationship is much more important than it is presumed to be in behavioral interventions. I like this, although I feel the therapeutic alliance is important for others with autism spectrum disorders too.

One thing I don’t like about Newson’s theory, is that she presumes PDA sufferers to be manipulative. Now I am not one to say that autistics can’t manipulate – they can and do -, but here comes the question again of where manipulativeness comes from: is it an innate PDA characteristic, or is it learned behavior in an attemt to manage a hard-to-cope-with environment? Newson assumes manipulation in PDA is not something the child chooses out of a will to be annoying, but out of a need for control and to avoid anxiety. Overload, of course, is often confused with anxiety, so in this sense I’m not too sure that I think.